When Eve Ensler, author of the 1996 play The Vagina Monologues and progenitor of a new era of feminism, body positivity and radical self-love, was diagnosed with cancer, she finally felt connected to her body. After years of interviewing women across the world about sexuality, violence, bodies and knowing them, it took losing part of her own vagina - as well as uterus, ovaries, cervix, fallopian tubes, rectum and sections of her colon - to uterine cancer to feel at home in her own body.
Although not always as catastrophic a process as that, knowing our bodies, regardless of gender, is an ongoing endeavour. Some of us feel connected to our physical selves from very early on, while many continue to struggle to do so well into their lives. Complex obstacles such as body dysphoria, physical signs of abuse or trauma or physical disabilities often complicate matters further: Does it change our sense of self? Do we fight against it and try to be our older selves, or allow it to change us?
These immense debates most often play out in the small, quiet moments we share with others, or ourselves. Add to this the complicated unwritten rules of dating and relationships and the waters become murkier for some. How do you navigate the already hazardous and unpredictable world of intimacy when you have an illness or disability?
As part of its Intimacy exhibition, The Science Gallery, Dublin ran a panel discussion on just that, featuring journalist and activist Louise Bruton and Ph.D. researcher in sexuality studies at Dublin City University, Caroline West. They spoke to RTÉ Lifestyle about the reality of intimacy when living with an illness or disability, the need for inclusivity and how society is progressing when it comes to sex and relationships.
The event argued that intimacy was a basic human right, as the touch of another person works to comfort and validate others, and its absence causes profound emotional distress. Bruton notes that this isn’t always the case, and says "Intimacy isn’t an important thing for everybody".
"But the fact is that in some cases people are denied the choice to have relationships with other people, if they’re living in care or if their families are perhaps their carers. Adults do not have a lot of freedom to have consensual relationships, if they have certain disabilities and that’s something that I think a lot of people forget."
She adds: "So, it could be easier to focus in on things like, say you’re in a wheelchair and you’re not having that actual access but people are actually full on being denied that right, and I think that’s something that we need to look at a lot. It’s a much bigger subject than it is just Tinder and hook-up culture with disabilities."
For people with illnesses and/or disabilities, there are a range of practical obstacles that many able-bodied people will never have to contend with. Gauging when to tell a partner about your condition, specific actions or movements that are not possible for you or are all factors that have to be considered.
West also notes that "certain medications might delay orgasm or completely stop orgasm altogether or make you gain weight and that can affect your energy levels or self-worth", factors that count especially for those managing their mental health. She adds "and that’s for everyone as well. Certain medications might make your head a bit fuzzy when it comes to communication, when it comes to sex. It’s about being kind to ourselves and being gentle and accepting that this is where my limits are."
There is also the matter of Section 5 of the Criminal Law (Sexual Offences) Act, 1993, which states that any person who engages or attempts to engage in sexual intercourse or buggery with a person who is mentally impaired and is not married to the person in question will be sentenced to either 10 years or three to five years in prison for the respective acts. It also states that a male who commits or attempts to commit an act of gross indecency on another male who is mentally impaired will be sentenced for two years.
In this context, "mentally impaired" is defined as "suffering from a disorder of the mind, whether through mental handicap or mental illness, which is of such a nature or degree as to render a person incapable of living an independent life or of guarding against serious exploitation".
Discussions around whether or not this law protects the people it intends to are delicate ones, as are any discussions about people with illnesses or disabilities that run the risk of generalising. Although created just 25 years ago, society has gained a consciousness and vocabulary that is up to the task of interrogating the 1993 Act and society is increasingly questioning whether it is the best law it can be. Among the most vocal of these dissenting voices has been Senator Catherine Zappone, who in 2014 brought forward a bill seeking to repeal the section.
The following year, Fine Gael TD Frances Fitzgerald voiced her support during a Seanad debate, saying that the act "fails to facilitate the full participation in society of disabled persons and the full expression of their human rights". She added that "Achieving the necessary balance between these rights and ensuring appropriate protection is crucial".
2017 saw the introduction of the Criminal Law (Sexual Offences) Act 2017, which repealed section 5 of the Criminal Law (Sexual Offences) Act, 1993 and replaced it with more comprehensive and clear offences about the exploitation of people with disabilities, outlining that if the person has a condition that would make it impossible for them to understand certain sexual situations and then consent to them, it is an offence.
West notes: "You do have to tread carefully because there are vulnerable people out there that can’t consent to sex."
"1993 was a long time ago, especially in Irish society, so it’s probably a case of sitting down and reviewing the literature but actually talking to people who have disabilities instead of just assuming that people without disabilities know best".
What’s underpinning the misconceptions about intimacy, illness and disability? West believes it’s fear. "I think we have a lot of fear around conversations about sex in general, fear around what’s good, what’s bad, what’s normal and a lot of anxieties around sexuality. And then you throw mental health into the mix as well, and people just don’t seem to know where to go", she says.
She highlights how, despite many high-profile leaps forward in progressive legislation and social initiatives, Ireland lags behind in how it approaches the sexual health of its citizens, especially those with disabilities or illnesses. "In different countries like the Netherlands they have certain programmes where, if the level of consent is there, people with intellectual disabilities can employ a sex worker that’s specially trained. We’re nowhere near having that conversation in Ireland."
At the same time, Bruton - who is a wheelchair user and runs the blog ‘Legless in Dublin’, which rates public spaces on their level of accessibility - cautions that generalisations about how dire the situation is for people with illnesses or disabilities is damaging. "A lot of the time, because of the position I’m in as a journalist and having a visible disability, I’ve often been approached to comment on how difficult it is to be disabled and to have a love life or sex life. So, they are coming in with an immediate negative assumption or negative perspective on my life".
"So that’s what I think we need to challenge, that we can’t have any assumptions, negative or positive on anybody without getting to know them."
Her 2017 Dublin Fringe play Why Won’t You Have Sex With Me? was written to challenge this assumption, as she says: "It was to challenge the idea that we can guess anything about someone else based on one thing, but also when it comes down to sex in general, everybody, no matter what their background is, everybody has their own hang-ups."
When it comes to representations of people with illnesses or disabilities, there are very few in pop culture. "As far as my experience, I know that there are realistic representations of sex and disabilities in movies but I have not seen them", Bruton says. "It’s not within my radar and I would be someone who’s quite aware of what’s going on in movies and music, but it hasn’t made its way over to me. For me not to experience it, it means it’s not a mainstream or accessible thing."
Sex education undoubtedly has a crucial role to play in this, and the stakes are even higher when Ireland’s traditionally puritanical approach to sex are taken into account, not to mention the long list of sex- and relationship-related abuses that stain our history. This is clearest in our language, and what we choose not to speak about rather than what we speak about.
"Language is really stunted in Ireland when it comes to sexuality because we’ve such a long history of oppression with the Catholic Church and the Magdalene laundries", West says. "And everytime you talk about sexy it’s just STIs, pregnancies or porn and we don’t really talk about pleasure. We definitely don’t talk about mental health and pleasure because we’re still in that place of fear when it comes to mental health. Your image is of someone who is suicidal."
So in a society undergoing a sea change, what does effective and progressive sex education look like? For West, it would need to be "calm and rational", avoiding the negative connotations of sex as a fundamentally bad and damaging thing. "It’s about taking a sex-positive approach and recognising that sex can be fun and that you can have as much sex as you want or as little sex as you want", she says.
She adds that when it comes to representing those living with an illness or disability, discussions should not cast them as "purely asexual, which I think is the dominant assumption most of the time, or hypersexual".
"Getting away from that binary that someone’s either manic or has no desire. Looking at people as if they’re people, which is such a radical idea if you look at the sex education we have now, it’s so poor."
Reassuringly, Bruton suggests that there isn’t that far to go to achieve what she feels is effective sex education. "Sex education has gotten better in primary school", she says. "Sex ed comes in video forms in primary schools, and it’s much more detailed and realistic than it was for people who were in school 20, 30 years ago. That’s something that’s not actually spoken about a lot."
In terms of whether we’re improving as a society and doing better by our future generations, Bruton feels that argument is practically null and void as the eras of sex education in Ireland are so vastly different.
"Of course, it’s going to be a lot better, but we can’t compare our previous sex education to what’s going on in schools now because it’s just so vastly different."
"And in some of the videos that they show, there is actually a person in a wheelchair included in the footage. So I think generations to come are going to have a much better idea of what sex really is and what intimacy means for them."
But beyond education in school, there’s social education to be considered, too, and the norms and signs we pick up as we go about our lives influence how we treat others in more immediate and potentially damaging or helpful ways.
"I think the way we date in Ireland is generally fuelled by alcohol", says West, "so there are a lot of signs that get mixed anyway. A lot of relationships start at 3am at Coppers, y’know?"
"We have a lot of conversations about how Irish people date and have sex, but I think if you reduce it down, it’s about meeting a person wherever they are. It’s saying ‘I like this person, and they also have this thing so what does that mean for us in real life?’"
Bruton agrees that there is a need to reform the way we think about sex and relationships, but adds that the work to achieve that is already well on its way. "I think that the conversation is moving in two parts. It’s becoming more progressive as the idea of consent courses are being introduced to more colleges and universities, so talking about sex is increasing", she says.
"But then as that’s increasing, you’re then hearing the voices of people who are closed to that more. We’re living in very conflicting times at the moment because as we’re succeeding in one area, we have the opposing ideas amplified as well so I don’t think you can undo the benefits of learning consent or unlearning the benefits of open communication."
If you are affected by any of the issues raised in this article, you can contact; The Samaritans (phone 116123), or Pieta House (1800247247).